Loss of Child Leads Family
to Make a Difference

Couple will hold their first Walk for PKD this September

Amanda and Trent Collins of Martinsville, IN, have two children: 8-year-old Isaiah and 6-year-old Makayla. They also had a third child: Hannah Bryanne born June 7, 2006. Hannah died June 8, 2006, just 21 hours after birth. She lives on, however, through her family’s love and dedication to helping the fight to find a treatment and cure for the disease that took her life.

During an ultrasound on February 10, 2006, doctors saw a problem with Amanda’s pregnancy. Amanda and Trent were told that their baby had the recessive form of polycystic kidney disease (ARPKD), there was no hope, and it was lethal. After they returned home that day, they opened brochures provided by the doctors and were heartbroken to see that, rather than providing information about ARPKD, the subject was How to Prepare for a Funeral. Although given the option to abort the pregnancy, the Collinses knew it was something they could not do. Instead, they did everything possible to fight for their baby’s survival.

Soon after the diagnosis, Amanda began to research. Among other things, she found the PKD Foundation website and read a story about another family whose child (also named Hannah) had ARPKD and was doing well. Amanda spoke with Hannah’s mother, who offered information and advice, including get a second opinion.

That advice led to two visits with a team of doctors at a fetal care center in Cincinnati. Trent and Amanda wanted the center to perform a special procedure amnio infusion recommended as one possible course of action. However, after meeting to discuss the baby’s situation, doctors decided against it. They felt that it would be too risky, especially since amnio infusion was new to ARPKD, and there was not a lot of evidence about its benefits.

Back home in Indiana, Amanda found a new high-risk pregnancy specialist, and doctors did as much as possible to ensure that the baby would live. Hannah was delivered by C-section. She cried and looked healthy but cried hard enough to pierce one lung. She was placed on a ventilator and, after receiving two dosages of steroids to help, could not be given any more. Her oxygen levels dropped, and the family was called at 2 a.m. They were able to visit and hold Hannah before the ventilator was turned off at 8:15 a.m.

After Hannah died, the Collins family had genetic testing performed. It took three months to receive the test results, but, to their astonishment, they learned that Hannah did not have ARPKD. Instead, the tests showed that she had the dominant form of PKD autosomal dominant polycystic kidney disease, ADPKD. Although stunned to hear this news, they were happy to know what actually took their baby’s life and grateful that insurance made it possible to perform this important test.

Trent and Amanda have had a difficult time dealing with Hannah’s death but are now working to make a difference. Amanda was hospitalized for weeks due to stress and was put on medication. Although she eventually went back to work, she also struggled emotionally. It was difficult to be around other pregnant women. Trent and Amanda wanted to do something to improve things, so Amanda contacted the PKD Foundation. That led to a decision to hold their first Walk for PKD this September. Although they will never be the same, working on the Walk for PKD gives them a purpose and the comfort and knowledge that Hannah’s short life will lead to a greater good. Telling Hannah’s story lets others know that she mattered. Amanda and Trent are happy to have people contact them at collinsal2003@yahoo.com. They also offer this advice ask questions, conduct research, be persistent, and never give up.

Looking for Support?

If you have a child in your life diagnosed with ARPKD, you may need some special support from others in similar situations. The PKD Foundation’s ARPKD Chapter provides families with education, comfort and empowerment in tackling the many medical and emotional issues related to ARPKD. The ARPKD Chapter also raises money for ARPKD research, increases awareness of ARPKD, lobbies for more federal support and more. Please note: Anyone who has lost a child to ADPKD is also welcome to join the ARPKD Chapter. You are not alone. Contact ARPKD Chapter Co-Coordinators Kirsten Sclater Booth at 914-763-3795 or kirstensb@yahoo.co.uk or Julia Roberts at 404-636-6650 or julia@robertsresource.com.

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